Just Diagnosed

Ld: you are at the very scariest time. You just don't know enough to develop a plan of action. You will soon, and that will make it better. Right now you can just fear the very worst, but grade one is terrific and the news coming may be less bad that you can imagine.



I had an area of bad stuff about that size. Largely DCIS but innumerable foci of IDC. Still, it didn't do yet any of the stuff cancer needs to do to spread. So no lymph node involvement. I'm just ending rads and I've definitely been one of the luckiest of the women sitting in the waiting room.



I opted for a lumpectomy; lost about a third of my breast. They took out 10 cm along one dimension. I have been totally amazed to find I've sailed through radiation. Almost no skin change. I'd count the whole thing as a breeze, were it not for the fact that my supervisor at my university has launched a fierce attack on me, and I just discovered tonight that my son, currently a 1000 miles away, is having what seems to be a psychotic breakdown. Being a parent makes one very vulnerable.

I'm waiting for result too.  It's so hard waiting. 

I had 2 tumors in one breast and both were small.  One was IDC and the other was ILC.  If my tests come back that the ILC is not aggressive then it will be radiation for me.  That's what I'm hoping and wishing and praying for.  I'm stage 1, my nodes are clear. 

You are wise to get a second opinion.  Good information from reliable sources is very helpful.  There is a stage 3 forum here on this site.  By reading there you can see the positive stories of others.  Ask lots of questions when you meet with your doctors, and be sure you understand the answers.  Don't be shy about asking them to explain further or re-explain.  I recorded the sessions and got copies of every test/report, etc.  We are all here to support one another. As you go through this, just know you can lean on us.  Hugs, G. 

It sounds like you are about where I was three months ago in August.  I agree with what's posted above--you are absolutely at the most difficult point of knowing something but not everything you need to know yet.  Everything about your story is nearly identical to mine, so I hope it gives you some comfort to know that I've made it through the 3 months, that I am doing well and that most of all I am getting better!  The tumor is responding to chemo well and shrinking, and I've got a surgery date on the calendar.

Specifically, I have ILC that did not show up on screening mammogram in Dec 2010.  It is/was (since it's shrinking) a large tumor, multifocal, and probably anywhere from 7 cm to 10 cm.  It was never fully visualized by u/s or mammogram until the MRI.  Then, there was something showing up on the other breast (right) as well.  They tried to ultrasound and mammogram that in hopes of doing a biopsy, but nothing would show on those tests so they could not.  My surgeon thinks it was related to hormones, but we are waiting on a December MRI for final word.  I have one lymph node involved on my left side which was biopsied and cancerous.  I went through all of the scans and no metastasis was found.  I had two second opinions which both supported my treatment plan.  All of this took about 3 weeks to find out.  3 very nerve-wracking, emotional weeks.  

I then began neo-adjuvant chemo at the end of September.  I'm halfway through (yay!) and switching from one drug combo to another drug.  I'll be having surgery followed by radiation.  I am doing well and as I said above, am getting good news at every visit.  

There are not as many of us with the ILC here, but I'm sure you'll be hearing from others of us.  From what I'm told, it is very typical for ILC to be a large tumor before it is found and to avoid detection on mammos.  Hard to take, but you are not alone in this experience.  And just a few more things...I'm still working during the treatment.  I'm a mom too, although my only son is at college. I have faith that you are going to get past this period of time and are going to be just fine!  Please private message me if you need to.

Hi lemondrop. Sounds ilke we are in similar curcumstances. I was diagnosed November 10. Thanks to fast moving medical caregivers, I'm scheduled for bilateral mastectomy December 8. I will keep you in my prayers!

lemondrop,  Have you had any luck in meeting with a different treatment team?  I hope it hasn't been too difficult for you.  Thinking of you,  G.

Hi lemondrop...as others have said, this is the scariest time so it's no wonder you are afraid. When you start having treatment it will give you a sense of control and although chemo etc is no picnic, it was do-able - keep telling yourself it is killing the cancer for you and your kids - makes it easier. Also, these boards are a lifesaver - ask anything and you will find information and comfort.

I was diagnosed with ILC in 2006 - 11 cm tumour, 10 nodes - all this depsite repeated checks and mammos and ultrasounds. I had a bmx and 6 rounds of chemo, 30 rads, 2 years tamoxifen and now aromasin. But the point is large tumor, nodes involved, and here I am 6 years later doing fine. My kids were 6 and 9 at the time so I know how hard that is. Good luck tomorrow and I hope you can feel the big warm hug from Canada protecting you! xoxoxooxo

Hi lemondrop, I had a huge tumor too 10cm, they may want to start you on neoadjuvant chemotherapy to shrink the tumor first before surgery and to see if it responds to the chemo, I've had 5 rounds so far and my tumor has shrunk to basically nothing, at least I know the chemo is working this way.

Good luck with your new team, I also changed surgeons because I felt the first one I saw had no empathy, we need to feel comfortable with who is looking after us. {{{HUGS}}}

Hi,

The waiting is so hard and there seems to be plenty of that....always waiting on something. I wish you peace until you get to meet with your new team on the 6th. It's so important to be comfortable with all of your doctors. Once you have a plan you'll feel better.

 I have had my surgery, bi-lateral mastectomy with reconstruction. I am now waiting to get my Oncotype score back. I'm feeling that anxious feeling again wondering if I need chemo. With any luck and lots of prayer, I'll be able to skip that and just do hormone therapy.

 Lots of love and prayers to you and your family!

Keely 

 Like Peggy, I was diagnosed with ILC in 2006 with a honking big (10 cm) tumor and lots of lymph node involvement -- and here we both are 6+ years later.  You can be too!  Hang in there, keep enjoying sunsets and time with your kids, and take this one treatment at a time.

seacretgardn - I am sorry that you find yourself here. If you read through the ILC threads, you will find so many of us, like you, had dense breasts nd normal radiographic studies shortly before being diagnosed. Try not to beat yourself up but to use your energy to move forward. I know it's easier said then done!

I also had 2 positive nodes with extracapular extension (ECE). I had dose dense AC x 4 followed by dose dense Taxol x 4. So chemo every 2 for 8 treatments. I then had radiation to my breast, chest wall, axillary & supraclavicular nodes. My radiation setup included a posterior axillary beam to penetrate deeply into the area where the ECE was. 6 months after radiatoin I had BMX. I have mild lymphedema. But I'm glad that I had all the treatment that I did.

I believe in 2nd & even 3rd opinions. It's most important to have a treatment team that you can talk to and trust. Your in the hardest stage right now, getting your treatment plan in place. Wishing you the best.

seacretgardn,  I wrote to you on another thread about checking out the B-47 trial with your oncologist.  Hugs, G.

seacretgardn....  I hope your appt went well.  I really struggled with treatment options. After my diagnosis, I had an MRI which showed all kinds of possible issues in both breasts. Due to that and the dense breast issues I did a double masectomy. Couldnt face the thought of future mammograms when they failed me this go around. My ILC also did not show up on mammo. After the surgery it was onto the chemo decision.  My onc said dose dense AC x4 and then taxol dose dense x4 w/herceptin.  2nd opinion onc said AC x4 with weekly taxol x12. I struggled with this decision for a month.  I had decided on the dose dense AC and taxol for a total of 8.  Well, then my Onc said she changed her mind basically and that she recommends the weekly taxol as well.  I have completed the 4AC and am now in the middle of the weekly taxol. I wont be having radiation. Good luck with your treatment choices.  I can tell you that the onc at mayo clinic told me that he felt dose dense was good for those that aren't Her2+, but for Her2+ he prefers weekly taxol.

mommyof2.....I've been reading your posts....while I generally say, trust your gut....you've had so many tests done and all are negative, maybe you need to trust the docs.....my cancer was initially found with a mammo....except what they found on the mammo ...which led to the spot compression mammo to an ultrasound...biopsy, and diagnosis then MRI, more biopsy and continued bad news....but as some of the other gals have said, for the docs to do a biopsy, they have to have something to biopsy....MRI's are known for false positives (more than false negatives).....so maybe its time to relax for now.....and have follow up in 3 to 6 months....

I was diagnosed last week with invasive pleomophic lobular carcinoma....is that the same as ILC????